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It's official: SickKids is a family affair

Like most hospitals back in the 1930s, The Hospital For Sick Children had a strict rule about parents visiting their children: They could come once a week, on Sundays, for just two hours.

By Paul DalbySpecial to the Star

Wed., April 29, 2009

Like most hospitals back in the 1930s, The Hospital For Sick Children had a strict rule about parents visiting their children: They could come once a week, on Sundays, for just two hours.

How times have changed.

Today, SickKids not only welcomes parents and family of young patients with open arms, they have also invited them on to a new in-house council that essentially helps medical staff run the hospital.

This new forum has a long name – the Family-Centred Care Advisory Council – but a short-term goal: to establish the medical team, patients and families as equal partners in the serious business of healing children.

When the hospital renovated its emergency department recently, members of the council gave important suggestions toward the new design.

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The result is brighter and quieter rooms in ER that provide a tranquil, rather than tense, setting for the young patients.

The rooms are also bigger, to accommodate larger families, and new chairs at the bedside drop down into beds so a parent can sleep alongside their child.

"A lot of that input came from families, they triggered how we might do something a little bit differently," says Margaret Keating, the hospital's chief of nursing. "They look at the world we live in through a different lens and that lens is really important to get the perspective on the child and their parents."

Keating sits on the new 24-member council of medical staff and patients or parents, which also works closely with the Children's Council at the hospital.

The council was formed last fall to replace an advisory committee that had been in place for 18 years to make helpful recommendations to the hospital executive, but it was always one step removed from the decision-making.

Not so with the new council, which has all the decision makers at the same table and makes decisions large and small in almost every area of the hospital's operations.

"The idea is that it's a real partnership, because the health-care provider is the expert in the patient's condition or the disease but the family is the expert in the child," says council co-chair Jill Adolphe, who has followed all four of her children into the hospital for treatment over the years.

Her co-chair on the 24-member council, Sydney Cameron, is further proof of this hard-earned wisdom. She has been coming to SickKids with her 15-year-old son Adam since he was a week-old baby born with a bilateral cleft lip and palette.

"It's a very long haul, he's had 12 surgeries already and we're still in for more," Cameron says.

"I have the experience of him being admitted lots of times, so when I come in, I can speak to the nurses and say this is exactly what's happening with him, this is how he's going to respond, this is what we want as a family and what can I do to help you? I can give meds, I take his temperature, I'm his mom. I don't give that up to other people."

Family Centred Care uses the commitment of Cameron and Adolphe, and other parents just like them, to forge a collaborative partnership between hospital staff and families.

Many of the innovations coming out of the new council are rooted in common sense. A new laundry room has been installed for parents, who often arrive without a change of clothing because they believe the stay with their children will be short.

Another initiative has encouraged doctors and nurses to drop the level of medi-speak or medical jargon and instead use general terms.

"When you've been working in that world, you don't even realize it – it's just second nature to speak it," explains Adolphe. "But families just don't understand it and maybe they're afraid to ask. And that could be a cause for misinformation or misunderstanding."

Another project now underway will create a buddy system to help demystify the hospital operation for all parents newly arrived with the young patients.

"It's about explaining and helping other parents navigate the hospital in a family way," says Cameron. "It's so important being able to talk to another mom."

The council is now compiling a registry of parents and family members with experience at SickKids who will volunteer as mentors for new arrivals.

Another proposal has seen the hospital take steps to celebrate public holidays and long weekends for those children and parents confined to the hospital.

"Families talked about how depressing it was over long weekends because there is nobody here," says Margaret Keating. "So we started with Christmas Eve, bringing in more volunteers, and we had singing, arts and crafts, a magician, face painting, readings, and a puppet show – not just for patients but for family and staff as well. Parents told us it really made a difference."

But members of the new council, both parents and health-care professionals, also point out their new initiatives do more than just improve the comfort level of parents and patients.

The new approaches toward better communication and family involvement also affect the bottom line of the hospital's budget.

"Patient satisfaction is tangible and they can measure that," says Adolphe. "If family-centred care is practised, the length of stay generally decreases and the number of discharges will increase. That frees up beds and cuts the hospital's costs."

Cameron agrees: "When you have a really comfortable parent and they feel secure about what's going on, that translates to the child's comfort level. He sleeps, he recovers faster and we're out of there. It's like a 360-degree comfort level and care for the entire family."

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